Why Care Partners are Key When Living with Tardive Dyskinesia
Teva has launched the It’s Not OK – It’s TD campaign. The national television
At first Angi thought the mild twitching in her leg was restless leg syndrome, and that was the initial diagnosis that she received. Then new symptoms started: involuntary swaying, body rocking and hip thrusting. With each new symptom, the doctors changed her medication…but with limited success. It was three years before anyone even said the words “Tardive Dyskinesia,” or “TD,” to her. TD may present as mild to severe twitching, shaking or jerking in the hands, feet, face or torso. TD is associated with certain prescription medications used to treat mental health conditions. So, when TD was first mentioned by Angi’s doctor, it was positioned as a side effect of something else, like her bipolar disorder or depression medications.
• What is Bipolar disorder?
During that time, the swaying and twitching affected Angi’s ability to sleep, work and relax. Preparing breakfast suddenly became a challenge, since she could not stand still. It would take three times longer than usual to do many tasks. Angi would often have to take breaks while her body was swaying back and forth. One time, when she was at a diner having breakfast with her two sons, her swaying and rocking in the booth was so noticeable that the lady sitting behind her came over and asked her to be still. She was humiliated. She stopped leaving the house as much after that. Her motivation to go out in public plummeted.*
Fortunately, Angi eventually found her new doctor and received an official diagnosis for TD, along with a prescription for AUSTEDO® (deutetrabenazine) tablets.
AUSTEDO® is a prescription medicine that is used to treat:
- movements in the face, tongue, or other body parts that cannot be controlled (tardive dyskinesia).
It is not known if AUSTEDO® is safe and effective in children.
*There are no data to suggest that AUSTEDO affects non-movement-related outcomes of TD.
Important Safety Information
AUSTEDO can cause serious side effects in people with Huntington’s Disease, including: depression, suicidal thoughts, or suicidal actions.
Do not start taking AUSTEDO if you are depressed (have untreated depression or depression that is not well controlled by medicine) or have suicidal thoughts. Pay close attention to any changes, especially sudden changes, in mood, behaviors, thoughts or feelings. This is especially important when AUSTEDO is started and when the dose is changed. Call your healthcare provider right away if you become depressed, have unusual changes in mood or behavior, or have thoughts of suicide.
Please see additional Important Safety Information below.
As someone already living with bipolar disorder and depression, Angi felt overwhelmed at the thought of another diagnosis. The idea of adding one more medicine to her treatment regimen felt unbearable. However, after some discussion with her family and encouragement from her husband, she decided to give it a try. Before starting AUSTEDO®, her doctor talked to her about the most common side effects, including increased sleepiness, insomnia and irritation of the nose or throat. He also told her to contact him right away if she experienced a high fever, stiff muscles, problems thinking, or increased sweating since these can be signs of more serious side effects.
Important Safety Information (Continued)
- have Huntington’s disease and are depressed or have thoughts of suicide.
- have liver problems.
- are taking a monoamine oxidase inhibitor (MAOI) medicine. Do not take an MAOI within 14 days after you stop taking AUSTEDO. Do not start AUSTEDO if you stopped taking an MAOI in the last 14 days. Ask your healthcare provider or pharmacist if you are not sure.
- are taking reserpine. Do not take medicines that contain reserpine (such as Serpalan® and Renese®-R) with AUSTEDO. If your healthcare provider plans to switch you from taking reserpine to AUSTEDO, you must wait at least 20 days after your last dose of reserpine before you start taking AUSTEDO.
- are taking tetrabenazine (Xenazine®). If your healthcare provider plans to switch you from tetrabenazine (Xenazine®) to AUSTEDO, take your first dose of AUSTEDO on the day after your last dose of tetrabenazine (Xenazine®).
- are taking valbenazine (Ingrezza®).
Other possible serious side effects include:
- Irregular heartbeat (QT prolongation). AUSTEDO increases your chance of having certain changes in the electrical activity in your heart. These changes can lead to a dangerous abnormal heartbeat. Taking AUSTEDO with certain medicines may increase this chance.
- Neuroleptic Malignant Syndrome. Call your healthcare provider right away and go to the nearest emergency room if you develop these signs and symptoms that do not have another obvious cause: high fever, stiff muscles, problems thinking, very fast or uneven heartbeat, or increased sweating.
- Restlessness. You may get a condition where you feel a strong urge to move. This is called akathisia.
- Parkinsonism. Symptoms include: slight shaking, body stiffness, trouble moving, trouble keeping your balance, or falls.
Sleepiness (sedation) is a common side effect of AUSTEDO. While taking AUSTEDO, do not drive a car or operate dangerous machinery until you know how AUSTEDO affects you. Drinking alcohol and taking other drugs that may also cause sleepiness while you are taking AUSTEDO may increase any sleepiness caused by AUSTEDO.
The most common side effects of AUSTEDO in people with Huntington’s disease include sleepiness (sedation), diarrhea, tiredness, and dry mouth.
The most common side effects of AUSTEDO in people with tardive dyskinesia include inflammation of the nose and throat (nasopharyngitis) and problems sleeping (insomnia).
These are not all the possible side effects of AUSTEDO. Call your doctor for medical advice about side effects. You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.
Please read the accompanying Medication Guide.
Before starting TD treatment, Angi used to be afraid to go out in public because of the highly visible symptoms of TD. Now, her symptoms are not completely gone, but have lessened, an outcome she never dreamed of having. Angi can plan things. She is reminded of how much her treatment is helping with her TD.
When her TD symptoms first emerged, Angi thought they were a sign of another mental health condition. Fearing an additional diagnosis, Angi tried to ignore her symptoms. But now she realizes the importance of being fully open with her support system, her care team and her physician. Angi’s biggest piece of advice to anyone dealing with a TD diagnosis is to go slow, keep track of what happens with your body and keep an open dialogue with your doctor.
For Angi, her husband is a key sounding board for how she is feeling on any given day. She can ask him if her twitches look better or worse to help gauge how she is doing. For those living with TD, it is often their care partner who first notices their movements. Angi also acknowledges how frustrating it is for loved ones to see what people living with TD go through on a day-to-day basis. It can feel disheartening when you can’t see the light at the end of the tunnel. But once you do see it, you realize that things can improve.
If you or a loved one are struggling with TD ask your physician about TD treatments.
Please read the accompanying Medication Guide.
You can learn more about It’s Not OK – It’s TD campaign here.
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AUS-43383
May 2021